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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Anyone else noticing the uptick in open hostility towards people with ASD?

949 replies

FFSakeDrinkSake · 17/07/2024 03:05

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

OP posts:
Thread gallery
17
MoveToParis · 17/07/2024 08:02

ReceptionTA · 17/07/2024 06:41

I think it's a very good thing that your friend is leaving education!

There are so many undiagnosed DC in the school system. I've been working in schools for a very long time and have only ever known one parent who thought their DC was neurodiverse, when various professionals disagreed. There are many, many DC muddling through who are clearly neurodiverse, but are coping with life so no diagnosis is sought. Society has come a long way in understanding neurodiversity, but still has a has a very, very long way to go.

I’m not sure I agree. It sounds like you think almost the majority of kids are neurodiverse, do you?
It also sounds like you think no children are disruptive because they want to be: that they are lazy, resentful and entitled? (And I am not conflating those in any way at all)

It also sounds like you think other kids should be expected to put up with whatever happens in the classroom- including verbal and physical assaults and having their education disrupted?

It’s very very easy to speak the platitudes, but many of those same parents and families will have voted for this system where the money and resources they want access to are not available.

Frowningprovidence · 17/07/2024 08:03

It's been like that on mumsnet for a long time. There are also a lot of trolls that pick autism as a topic.

DrRuthGalloway · 17/07/2024 08:03

Once again. You cannot "buy" an autism diagnosis, at least not one that meets NICE guidelines. It's not just a parent interview. We do observations, direct assessment and gather info from other sources such as school. You would have to coach your child to perform poorly on the ADOS, show symptoms in observation, have a particular social history etc.

Can we please stop perpetuating this particular lie?

Heatherbell1978 · 17/07/2024 08:03

BumBumCream · 17/07/2024 07:53

I think there are more kids with quite extreme needs in mainstream and this impacts on their classmates, and can cause hostility in their parents. My Y4 shares a classroom with a violent kid who I assume has SEN - the class sometimes has to evacuate to be safe from them. A child was pushed to the floor and their head banged repeatedly on the floor this week. I don’t know what diagnoses this child has, but I can see that experiencing that behaviour & feeling it’s ‘excused’ by their ‘special needs’ could lead to hostility from parents.

I experienced this in my DDs class when she started school last year. Class evacuated 3 times a day while the child kicked and bit the teacher and threw things around the classroom. It's hard to be empathetic when the behaviour of one child is impacting the education of another 24 and seems to take priority. The child is now taught separately with his own support teacher so it's been a positive outcome. He shouldn't be in a mainstream school but the system is in crisis.

AnnaSewell · 17/07/2024 08:04

I think if you have a family member with more marked degree of autism eg one who is non- verbal, it doesn't necessarily feel right when the same label is applied to those who come across as highly articulate, but shy introverted and quirky.

The post from the educational psychologist above, considering the effects of Covid and of parents who can't/don't encourage their child's communication also makes sense.

MoveToParis · 17/07/2024 08:06

DrRuthGalloway · 17/07/2024 08:03

Once again. You cannot "buy" an autism diagnosis, at least not one that meets NICE guidelines. It's not just a parent interview. We do observations, direct assessment and gather info from other sources such as school. You would have to coach your child to perform poorly on the ADOS, show symptoms in observation, have a particular social history etc.

Can we please stop perpetuating this particular lie?

That was perpetuated to me by my psychiatrist SIL who regularly gets threatened with professional and personal “annihilation” by parents who think they might disagree with her diagnosis/not diagnosis.

NineChickennuggets · 17/07/2024 08:09

I think some people must have been reading trashy articles of the type " These 10 diagnoses will give you an extra £600 a month"

There is a story doing the rounds at the moment where someone was supposedly getting over £2000 a month in PIP which is impossible.

MultiplaLight · 17/07/2024 08:10

Reading EP and diagnosis reports, it would be possible to diagnose most people with some form of ND. Previous "extreme" cases are now in the same band as a slightly quirky kid.

Adhd kid really doesn't have adhd. He's really really badly parented. He's on the edge of fabricated illness. Parrots out lines about his dopamine levels being wrong.

From a teacher POV it's a nightmare. Small reasonable adjustments are fine, having 50 page reports on 8 kids per class is unmanageable. Parents kick off because X likes quiet, whereas Ys parents kick off because she likes noise. SENCO says that it's the teachers job to meet the need and I'm stuck in the middle.

fishonabicycle · 17/07/2024 08:10

An awful lot are on adhd meds at the school I work at (private, so generally private diagnoses). Those medications always give an improvement in exam grades, regardless of whether you are ND or not. We are seeing a increase in disordered eating, weight loss (as those meds are appetite suppressing) and some cardiac issues. Some of those children definitely do not need those drugs.

WaitingForMojo · 17/07/2024 08:13

MoveToParis · 17/07/2024 08:02

I’m not sure I agree. It sounds like you think almost the majority of kids are neurodiverse, do you?
It also sounds like you think no children are disruptive because they want to be: that they are lazy, resentful and entitled? (And I am not conflating those in any way at all)

It also sounds like you think other kids should be expected to put up with whatever happens in the classroom- including verbal and physical assaults and having their education disrupted?

It’s very very easy to speak the platitudes, but many of those same parents and families will have voted for this system where the money and resources they want access to are not available.

The majority are ND, once you take into account everything that comes under the ND umbrella! It’s just that Neurotypical is the biggest group. I’ve seen estimates of up to 60%.

I don’t think that any child should have to ‘put up with whatever happens in the classroom’. I do think that the education system should be much more flexible and accommodating of neurodivergence. It’s very neuronormative and sets ND children up to fail.

It isn’t just ND children disrupting classrooms, or NT kids tolerating disruption! As you rightly say, these issues need resources and funding. I certainly didn’t vote for where we are right now!

DrRuthGalloway · 17/07/2024 08:14

MoveToParis · 17/07/2024 08:06

That was perpetuated to me by my psychiatrist SIL who regularly gets threatened with professional and personal “annihilation” by parents who think they might disagree with her diagnosis/not diagnosis.

Yes, a parent might think they can threaten a diagnosis out of her, but presumably she isn't actually giving one in a child she knows is not autistic as a result of those threats?

We do get parents unhappy with a non-diagnosis. They are welcome to seek a second opinion.

Eadfrith · 17/07/2024 08:17

I think ADHD gets a lot more dispute as to whether it’s ‘real’ or not, especially as inattentiveness can be down to all sorts of factors, including a disorganised, chaotic home life or poor diet. I do think ADHD is legitimate, but it also gets used as a scapegoat unfortunately.

ASD does also get a lot of dispute, and with going through the early intervention process right now myself with my own child, I find the biggest barrier to be the LA, and how they are allocating funding, or lack thereof. Local authorities are cutting back on SEN funding and have tightened the diagnostic criteria for EHCP’s. From my perspective, not every child with ASD will need an EHCP, because they’re really designed for children with higher needs within the education system. An EHCP might allocate funding for 1:1 TA support in school which in some cases is very much needed. But with the lack of funding and lack of staff there are many children with ASD who are falling through the cracks and that’s just not good enough IMO. Especially with things like early intervention, which is supposed to help reduce the likelihood for higher support needs later on, particularly with children who are showing signs of being able to integrate into a mainstream education environment, it would make more sense for the government to spend money at this stage, surely saving government money down the road. A child without a diagnoses can still be under SEN in a school setting and gain access to support, but it’s a postcode lottery as to whether that support is accessed or not.

There is a huge misconception around the term ‘label’ IMO where adults think that by pursuing a diagnoses that it will make it harder for their children, where sometimes a diagnoses can be incredibly helpful. It’s not just about gaining access to support and funding, it’s also about that individual understanding how their brain works. Parental ignorance and denial is akin to gaslighting, which is emotional abuse. It places the needs of the adult before the child. A child with a denial of having autism is going to end up with serious low self-esteem, and that is detrimental.

As for adults with undiagnosed autism, and I’d count myself in this group, I went through my childhood with nothing being picked up on at all, just instead being told I was lacking in an array of fundamental qualities that everyone else seemed to have, and so it’s safe to say that this has had an affect into adulthood.

There is also the elephant in the room where a lot of ‘high functioning’ autistic adults don’t like their ND to be seen as a disability, and it’s a very personal thing, and it’s about self-identity. But this can also undermine where adults with ASD can and do struggle with every day life. It’s a delicate subject in general.

Lastly, don’t go thinking that parents going through having an autistic child, or a child with a developmental delay realistically want to be in that position. It’s a very different parenting journey and it can be heartbreaking, isolating and lonely. There’s a lot of good to found in it too, and these children are also having their version of a ‘normal’ childhood, but it’s not some trendy label that we are shouting from the rooftops. It can and is very hard not knowing what the future holds for my child, and knowing that he’s already at a disadvantage compared to his typically developing peers. I’ll advocate for him until I’m blue in the face.

WaitingForMojo · 17/07/2024 08:18

fishonabicycle · 17/07/2024 08:10

An awful lot are on adhd meds at the school I work at (private, so generally private diagnoses). Those medications always give an improvement in exam grades, regardless of whether you are ND or not. We are seeing a increase in disordered eating, weight loss (as those meds are appetite suppressing) and some cardiac issues. Some of those children definitely do not need those drugs.

This is completely inaccurate and misinformed. ADHD meds will not lead to an improvement in exam results or focus for someone who doesn’t have ADHD.

Stimulant medication can suppress appetite but any person on them is closely monitored and dose / type of meds adjusted at the first sign of weight loss. There is undoubtedly an increase in ED’s but that has been the case for a long time and isn’t related to adhd meds. You may see both because Eating Disorders are much more prevalent in ND people. Blood pressure and heart rate monitored regularly too. No child is going to be prescribed stimulants if their physical health isn’t stable.

I’m not sure why you think you’re more qualified to judge whether a child needs medicating than the experienced psychiatrist who diagnosed and prescribed.

stickygotstuck · 17/07/2024 08:18

This remark by @GeneralMusings is key : The current school system is getting more and more ND unfriendly so people that in the past would have managed in school are not . This (and better knowledge) is why the number of diagnoses has jumped up.

As for parents pushing, I wish they didn't have to, and many don't because they haven't got the strength or the resources, many being Autistuc themselves. Parents are forced to push and don't get anywhere, which hugely sours the relationship with the school, even with the best will in the world on both sides.

I agree that school should not be the one making a referral. Many kids behave very differently at school and at home. The system is very broken but here we all are, playing by the system's rules, which suit no one.

Eadfrith · 17/07/2024 08:22

DP looked into an ed psych PhD however it would have to be self-funded. So that’s why there’s a shortage of them!

WaitingForMojo · 17/07/2024 08:24

MultiplaLight · 17/07/2024 08:10

Reading EP and diagnosis reports, it would be possible to diagnose most people with some form of ND. Previous "extreme" cases are now in the same band as a slightly quirky kid.

Adhd kid really doesn't have adhd. He's really really badly parented. He's on the edge of fabricated illness. Parrots out lines about his dopamine levels being wrong.

From a teacher POV it's a nightmare. Small reasonable adjustments are fine, having 50 page reports on 8 kids per class is unmanageable. Parents kick off because X likes quiet, whereas Ys parents kick off because she likes noise. SENCO says that it's the teachers job to meet the need and I'm stuck in the middle.

I’m glad you’re not my child’s teacher.

Nobody’s ’kicking off’. We are advocating for our child to be able to access education without damage to their mental health. Conflicting needs are difficult, and resourcing is a huge issue. But blaming parents and ND children for that is unacceptable.

You are in no way qualified to decide that a child with ADHD ‘doesn’t really have ADHD’. And do you have any idea how many ND families’ lives are devastated by allegations of fabricated illness. Why shouldn’t a family have educated their child about the role of dopamine in ADHD?

SpidersAreShitheads · 17/07/2024 08:24

Sadly OP your own thread is proving your point.

Non-qualified individuals deciding that children with a diagnosis don’t actually have the condition.

Bollocks to the fact that it’s incredibly hard to get a diagnosis and requires input and agreement from a skew of different professionals. Sally definitely knows best because she’s a teacher, or because her next door neighbour’s cat is a hospital cleaner….

People have always spoken over autistic voices. It was ever thus.

There’s a long-running thread on MN which is for slagging off ND people. It’s popular to be disbelieving and disdainful about neurodivergence while simultaneously spreading a whole shedload of myths, misinformation, and misconceptions. No one will pull you up for it on here so fill your boots.

Neurotypical people who think they know better don’t give a shit about listening to autistic people like me. Because in their infinite wisdom, they’ve decided that they know my condition better than me, and better than my doctors.

And they’ll certainly have people along to back them up, all nodding along with the fact that “everyone has a diagnosis these days” and other such nonsense.

It’s so utterly infuriating. Its literally our lives and our experiences, and yet we’re being spoken over by people who insist they know better with absolutely no evidence to back up their claims.

I wish, just for one day, all you naysayers could feel what it’s like from the inside. It’s not being “quirky”. If you experienced this for yourself you might finally understand. But as that’s not possible we’ll just have to continue with the snide remarks, open cynicism, and widespread disdain.

Goatinthegarden · 17/07/2024 08:25

I’m a teacher, not a doctor. I don’t decide what medical conditions my pupils do or do not have. However, it is my job to notice and help them to manage, their specific challenges that they face during school time. This might mean quiet work spaces, movement breaks, personal timetables, social skill practice, etc, etc, etc.

What I am finding is that two children with the same diagnosis rarely need the same interventions. I think we’re more aware now that each individual navigates life differently and some need more support to do so.

I do get frustrated because lots of people I know joke that I have ADHD because I have a lot of energy and rarely sit down, when in reality, I face absolutely zero challenges in my daily functioning, I’m just very fit, active and eat well and I find sitting around being lethargic to be really boring. It’s this kind of misperception and people just openly spouting nonsense about the challenges of different conditions which takes away from people who have genuine challenges, and makes it hard for others to understand. I also think there’s a lot of confusion because of the fact that you can have ten people with the same diagnosis and they can all have a varying array of needs and challenges.

I personally think medical science doesn’t yet understand neurodiversity properly…but again, I’m not qualified to make such a statement.

RazzleDazzleEm · 17/07/2024 08:26

Sadly op, you should hear how some education establishments talk about pupils with it. The language is absolutely disgusting /lack of info and training is woeful and they get away with it because each person thinks one knows what they are doing.

Whatafustercluck · 17/07/2024 08:29

A friend works in a Primary school and it appears every person and its dog wants a diagnosis for something. There is a huge shortage of Educational Psychologists and a lot of them won't do a diagnosis until children get to Secondary but parents still push and push.

Ed Psychs don't 'diagnose' asd, adhd or any neurodevelopmental condition other than dyslexia. They're used to identify a child's learning strengths and weaknesses for children who are struggling in certain aspects of their lives as a primary result of unmet needs in an educational setting. Their evidence can be taken into account by a team of specialists in paediatrics, but is not in and of itself a diagnosis.

Those saying that every man and his dog are seeking diagnoses because it's a 'trend' should perhaps learn first about how long, arduous and opaque the path to diagnosis actually is. My biggest fear is that actually there are thousands of children who probably should have a diagnosis who currently don't have one. Only the parents who are prepared to grit their teeth and strap themselves in for the long haul, having done extensive research and applied hours and hours of determination to the process, will persevere. How many parents do you think have the knowledge, the time, the determination to do that if their children are not actually struggling enough? It's coming up to three years in the system for our 7yo dd. We've jumped through hoops, done parenting courses, engaged in one to one mental health support, endured endless meetings and assess, plan, do reviews, TAF meetings, checked minutes of the above, battled with the local authority, prepared paperwork for Tribunal - the list is endless. Yet people talk about parents seeking diagnoses like they're choosing what to eat for dinner. It makes me rage.

Op, the only place I really see the attitudes you refer to is here on mumsnet. Thankfully in real life, the result of increased awareness of neurodivergence is that my dd feels more accepting of herself. She knows that people understand her, and can support her.

Titsywoo · 17/07/2024 08:29

wickerlady · 17/07/2024 06:51

@Periwinkl3 well autism can cause anti social behaviour, I don't deny that. But so can bad parenting, producing a generation of anti socials. And what's worse, a generation of anti socials who have been told it's not their fault!

Personal responsibility is key here, and it's really important that these are weeded out from genuine cases.

What's with all the bad behaviour talk? My son is autistic (diagnosed at 8) and he has several autistic friends (they tend to seek each other out!). None were diagnosed because they were badly behaved. I'm sure it happens sometimes but I'm not sure it is common.

I have heard people saying their child is autistic with no diagnosis though. I don't think people are wrongly diagnosed however.

WaitingForMojo · 17/07/2024 08:31

Goatinthegarden · 17/07/2024 08:25

I’m a teacher, not a doctor. I don’t decide what medical conditions my pupils do or do not have. However, it is my job to notice and help them to manage, their specific challenges that they face during school time. This might mean quiet work spaces, movement breaks, personal timetables, social skill practice, etc, etc, etc.

What I am finding is that two children with the same diagnosis rarely need the same interventions. I think we’re more aware now that each individual navigates life differently and some need more support to do so.

I do get frustrated because lots of people I know joke that I have ADHD because I have a lot of energy and rarely sit down, when in reality, I face absolutely zero challenges in my daily functioning, I’m just very fit, active and eat well and I find sitting around being lethargic to be really boring. It’s this kind of misperception and people just openly spouting nonsense about the challenges of different conditions which takes away from people who have genuine challenges, and makes it hard for others to understand. I also think there’s a lot of confusion because of the fact that you can have ten people with the same diagnosis and they can all have a varying array of needs and challenges.

I personally think medical science doesn’t yet understand neurodiversity properly…but again, I’m not qualified to make such a statement.

This is a very sensible post.

DrRuthGalloway · 17/07/2024 08:32

Eadfrith · 17/07/2024 08:22

DP looked into an ed psych PhD however it would have to be self-funded. So that’s why there’s a shortage of them!

That is not correct. The doctorate attracts a fairly meagre bursary of about 16k for the first year. Most trainee EPs are then employed by an EP service in year 2 and 3.

There is a shortage because there are only about 12 courses in the country. There are many, many applicants each year.

WindsurfingDreams · 17/07/2024 08:32

SpidersAreShitheads · 17/07/2024 08:24

Sadly OP your own thread is proving your point.

Non-qualified individuals deciding that children with a diagnosis don’t actually have the condition.

Bollocks to the fact that it’s incredibly hard to get a diagnosis and requires input and agreement from a skew of different professionals. Sally definitely knows best because she’s a teacher, or because her next door neighbour’s cat is a hospital cleaner….

People have always spoken over autistic voices. It was ever thus.

There’s a long-running thread on MN which is for slagging off ND people. It’s popular to be disbelieving and disdainful about neurodivergence while simultaneously spreading a whole shedload of myths, misinformation, and misconceptions. No one will pull you up for it on here so fill your boots.

Neurotypical people who think they know better don’t give a shit about listening to autistic people like me. Because in their infinite wisdom, they’ve decided that they know my condition better than me, and better than my doctors.

And they’ll certainly have people along to back them up, all nodding along with the fact that “everyone has a diagnosis these days” and other such nonsense.

It’s so utterly infuriating. Its literally our lives and our experiences, and yet we’re being spoken over by people who insist they know better with absolutely no evidence to back up their claims.

I wish, just for one day, all you naysayers could feel what it’s like from the inside. It’s not being “quirky”. If you experienced this for yourself you might finally understand. But as that’s not possible we’ll just have to continue with the snide remarks, open cynicism, and widespread disdain.

If it's the long running thread I am thinking of, it's for spouse's to vent about life with a partner with autism. And why shouldn't they be allowed to. It can be really tricky sometimes.

My daughter's just been made to feel like rubbish because her friend treated her horribly (nasty lies) but she was expected to forgive her friend "because she has autism".

I love my partner with autism but I am still allowed to set boundaries about what I will tolerate in his behaviour. Likewise my daughter is allowed to have limits in what is acceptable in a friendship.

I am all for increased diagnosis, I suspect most of my family may be autistic and I definitely have some traits. But i can see why frustration creeps in when some people use that diagnosis to create an entitlement that the whole world should bend around them.

Suzieandthemonkeyfeet · 17/07/2024 08:33

I’ve taught SN sports many moons ago and I know the spectrum exists and feel like the parents of these kids actually deserve recognition because it’s not easy - at all. Especially Non verbal kids.

The problem is the tick box for diagnosis for the lower scale has a lot of cross over with kids that have had traumatic experiences and bad parenting/mental health.

I’ve also noticed this especially with adult women who have suffered traumatic childhoods and/or complete burn out with life. I did an online test for ADHD and it came back that I had 92% probability of having ADHD.

No problems as kid but dealing with a leaving an abusive ex, traumatic break up, burn out from over work and life as an adult. Yet I have all the symptoms of some one with ADHD

My partner has just been diagnosed with having ADHD by a private therapist. He was sexually abused as a child and one of his parents beat him with a belt.

When bad things happen to us as a child it damages the brain a lot and the result can be very similar to the lower scale spectrum or ADSD symptoms

I know this is probably anecdotal but I know a woman - personally - who convinced her GP that her dd had ADHD and she sold her medication as they are uppers for people with out it. Her dd might have ADHD but it also might be contributed to the chaotic home life and mother who’s an alcoholic.

I do think we need to delve deeper in to the diagnosis rather than just using a tick box